Having a bad day
AnonymousApril 19, 2007 at 10:16 am
I have been coming here for a few days and wanted to thank those who have assissted me with insight and information. Today is a tough day, my pain is intense and I still am working fulltime while trying to start my SSDI filing. I can’t quit my job until the 12th of May due to insurance and continuation of benefits for myself. I am in the ultimate catch 22 and really having a rough time keeping going. I have looked at numerous websites about CIDP and being 34 years old it’s hard to adjust to the facts and the lack of facts about the future. Everything is up in the air and a waiting game. I’m confident that I will be approved for SSDI but I can’t file for another 20 days or so, then I have to wait, wait wait. I am just so tired and uncomfortable and really just want to rest but I have to get to work very soon. I hope everyone else is doing better than me today. Thanks for listening.
AnonymousApril 19, 2007 at 12:26 pm
I’m sorry you are feeling so bad. There is nothing worse than having to get up and get moving when you don’t feel like it. It would be so nice to lay in bed for awhile.
I too am having a hard time, not as bad as yesterday. Our 3 year old is not getting better, I guess he’s getting a little worse and it’s hard to comprehend what next year or even the next will bring for him. I don’t sit and dwell on the future, I just want to get him strong today.
Please remember there are many ppl. that came before you and there will be other’s behind you. At least there is a wonderful site like this that we can all go to. Can you imagine having this in the 80’s when there was not internet?
AnonymousApril 19, 2007 at 1:16 pm
I also work full time, so I can sympathize with what you’re going through. Although pain has not been my primary symptom, before I got treated I was often so weak that I thought I couldn’t possibly get through the day (or get out of my car, for that matter!). We do what we have to. I wish you the strength to get through the days until you can stop working and wish you luck in getting the benefits you deserve.
There’s lots of good folks here pulling for you. Hang in there!
BTW, I’m 46 years old and I’m having a really hard time adjusting to the facts of life with CIDP, too, so don’t beat yourself up about having a rough time. This is a rough disease.
AnonymousApril 20, 2007 at 12:50 am
Mac, sorry you are having a bad time right now. is there anything you can do to get the pain under more controll? less pain and a big countdown might make it alittle easier on yourself. vent as much as you need to and stop apologizing-its not necessary:) Think positively!
AnonymousApril 20, 2007 at 9:33 am
I have to say that everyone here is so nice and willing to lend a helping hand right away. I feel very lucky to have found this site and look forward to becoming a regular here. My wife says that I apologize for my disease way too much, which is hard sometimes. I have been reading a lot lately about CIDP/GBS and I don’t have to like the disease but I’m understanding more about it everyday. I’m on prednisone for the first time and I haven’t seen any benefit yet (on week 3 now) I’ll be on it for another 3 weeks and hopefully I’ll feel a difference. IVIg did nothing for me 5 years ago but I may give it one more go. I am on the count down right now to leave work. May 13th 2007 is my last day. 22 days from now, it’s like 5 minutes really, itwill be over before I know it. Is anyone on Myspace here? I have a site if anyone wants to communicate there as well. That way we can put a face to the name. I hope it’s not against the rules to post my site. myspace.com/childs23
AnonymousApril 22, 2007 at 1:58 pm
Sorry to hear you’re having a rough time– I’m finding it increasingly hard to accept the quality of life (and continuing decline thereof) myself. Just got my [B]third[/B] denial for disability– and while my doctors’ surprise helps [I]some [/I](heck, they were surprised at the FIRST denial!) it doesn’t reduce my frustration of feeling like someone just moved the finish line yet AGAIN. I think it might be helpful (mentally and emotionally) if I could get pissed (like a mini-vacation from what I feel now, kind of), but I simply don’t have the energy– ha!
HANG IN THERE!
AnonymousApril 27, 2007 at 3:37 pm
I myspace’d you.
I was first diagnosed when I was in my early 30s, so I’ve been living with this for 12 years now. It’s been rough sometimes, but overall I’ve had long periods (years) with very few symptoms–just some numbness and tingling. I can’t rollerblade, tho, and I’m always ravenously hungry from the pred.
You must be logged in to reply to this topic.